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My father passed away last October of 2023. He was diagnosed with MDS last May of 2023. I more or less moved in with my parents at that time. I have also been married for almost 39 years. My husband was a trooper and still is. I cared for my mother and father both during this time. On August 7, 2023, I had to make the choice to call Hospice for my dad because the choking and pain was too much. He became bedridden but my sister and I cared for him for 6 weeks until he passed. After my dad’s passing, my sister abandoned me. Now I care for my mother who has chosen to go on Hospice because of COPD and she’s on oxygen 24/7, she has stage four osteoporosis. She has made the accusation that am mentally abusing her. She is a very moody manipulative person and has everyone believing she is an angel. I have been here in my parents house for almost a year. I have illnesses such as my hair is falling out, I have severe eczema in my head, I have lumbar sacral disc disease, and other illnesses. I have no help at all. I asked her if she would be willing to go to respite care for a week and her response was, “I will kill myself if I leave my home.” My body and mind are in terrible shape because I haven’t had a break what so ever for a year. I am totally burn out. I can’t just leave her. I do love her and care for her, but she has said I don’t love her. Please any advice would be helpful.



totally burnout

When you say your mother is a moody, manipulative person I assume she has always been like that. She sounds mean, difficult and unfeeling as well. Any cognitive issues?

If she’s in her right mind I think you have every right to politely inform her that you can no longer be a full-time caregiver and that you will be stepping back, with respite, other paid caregivers, she goes into a facility, etc. Caregiving has to work for both parties. She doesn’t have a right to toss false accusations around. You don’t have to be her victim.
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Reply to SnoopyLove
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You don’t ask her if she will be willing to go to respite. YOU TELL her she is going to respite because if you don’t you will fall ill and she will not have you to care for her at all .

Honestly , why are you doing all the caregiving ? Hire aides using Mom’s money to come in the home . I read your profile , you have a lot of your own health issues. IMO you should place Mom in a facility no matter what she says permanently .

She’s dying , don’t let her take you down with her . We had another poster caregiver last night who has had multiple strokes , so her Mom will go to a facility anyway .
There is no reason to die along with your Mom . Your mother is going to be miserable wherever she lives.

Don’t let Mom’s threat to kill herself if she leaves her home get to you . My mother did that as well .

Call your Mom’s local County Area of Aging. Tell them you are too ill to take care of your mother anymore and she lives alone at home , that you will be going back to live in your own home. They will send a social worker out to the home. This is how I got my mother out of her home and placed in a facility.
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Reply to waytomisery
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AlvaDeer Apr 15, 2024
I so agree with your advise. I really have nothing to add.
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You do not ask, you tell her this is what is going to happen. It is no longer about what she wants, it is about what she and you BOTH need.

She is not independent and needs to be placed in a home with 24/7 care.

This "I will kill myself" is most likely pure manipulation.

If you don't take the bull by the horns like now, you may die first, some 40% of in home caregivers die before the OP they are caring for. Don't become a statistic.

Who has the DPOA? If not you, time to back away and let that person deal with your mother.

Stand up to her, take your life back.
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Reply to MeDolly
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You don't need her permission to take care of yourself. She saw how you and your sister orbited around your Dad and she's expecting the same. But, this time is different and it can't happen. Your sister is also burned out so don't blame her for removing herself -- at least she saw the imminent problem.

Don't discuss it with her except to inform her that people are coming in to help (or she is going someplace while you take a "medical leave"). If your Mom has any dementia there won't be any reasoning with her anyway, so save your emotional and mental energy.

Does she qualify for LTC? Go to her doctor's office and ask for the HIPAA Medical Representative form. Take it to her and have her sign it and write in your name and return it to her doctor's office. You can also download the PoA paperwork online and put that in place also -- which for me would be Condition #1 of any further management of her affairs. Then see if she qualifies for LTC, which would be covered by Medicaid if she also qualifies financially.

I hope you get the rest you deserve and need.
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Reply to Geaton777
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Please ask yourself why you’re sacrificing your health and wellbeing for someone who’s unappreciative, manipulative, and threatening to you? There’s not enough love in the world for that to make sense. One day your mother will be gone and you’ll be left sick and having lost your health. If you don’t change this situation and look out for yourself, no one will. A loving mother in her right mind would never want this for you. It truly doesn’t matter what she has others believing, you know the truth of her and how it’s messing up your life. Your sister left for good reason. Only you can change here, mom isn’t changing a bit, she has it made. I hope you’ll gather the courage to move mom to a managed care setting, minus any discussion or argument, and reclaim your life and health, and soon. We only get one life
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Reply to Daughterof1930
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Talk to the Hospice Nurse or the Hospice Social worker. Tell them you can no longer care for Mom. That caring for Dad u had your sister. You now have no one to help and your health is being effected. I don't think the 5 days allowed for respite is going to be enough. If Mom can afford it, maybe an AL would be good.
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Reply to JoAnn29
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I did the same type of thing you are doing, except my mother was very ill for over 3 years, was in hospice for 6 1/2 months and then passed. Everyone thought she was the sweetest thing, but she was very moody and big on guilting me. Also, my only sibling did next to nothing.

Many members on here suggested I place her, as I was still working, had a husband and children at home, and was becoming sick. I had promised mom I would support her dying at home, and didn’t want her upset and angry, and on and on. Now she has been gone for 6 weeks and I still haven’t recovered in the least. I have multiple autoimmune markers and have to wait another month to see a specialist (because I didn’t address anything while she was still alive).

My point is, there no shame in saying you can’t do it anymore. It sounds like you moved out of your home with your husband almost a year ago? My marriage was also strained to the breaking point. Idk if I will ever recover from this, and my husband and I were planning an active retirement in the next 5 years or so. I wanted to keep mom “happy” and she was never happy anyway. Save yourself.
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waytomisery Apr 15, 2024
Lily , I was hoping you would answer this question .

@Myrtie , you should read LilyLavalle’s thread of hospice at home , it’s a cautionary tale .
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Your mother's threat to take her own life may be a way to blackmail you into making no further move to have her placed in care. And it may not. But it is reportable to her doctor immediately.
Then do sit down with your mother and tell her that you love her, but that you yourself can no longer go on doing this care without risking you own life, and that you are not willing to do that. Tell her you understand she will grieve and mourn this loss, as will you, yourself, but that this is the way it must be. I absolutely agree with Waytomisery.

Please don't thrown your own life onto your mother's funeral pyre. No mother would/should want that of their child were she in her "right mind".

This will be very painful, and there's honestly no way around that pain. I am so sorry.
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lealonnie1 Apr 15, 2024
Reporting a threat to take her own life to the doctor, for an elder on hospice, is laughable really.
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If mom is going to kill herself in respite care, why did she hire hospice? She can just do away with herself now and save everyone all this aggravation and expense. 😑

I listened to all this nonsense from my mother since I was FIVE years old! That's how long she was pulling the "I'll kill myself" stunt and guess what? She lived to 95 years old asking for every pill and treatment under the sun to SAVE her life, while threatening to "run out in traffic" or "jump out the window" in the process! I reached the point where I'd tell her she lived on the first floor so jumping out the window wouldn't do the job. That she'd have to climb up to the roof and jump from there.

Get mom into respite care and tell her how long she's staying when you drop her off. To get her in the car, you're taking her out for a nice lunch.

Your wellbeing matters too. Just because SHE doesn't think so doesn't make it true.
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BurntCaregiver Apr 15, 2024
Me too, lealonnie. Me too. I've been the sounding board for my mother's nonsense (same as you) and for as long too.

It got to a point where I just ignore it and pay no mind.
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Let me start off by saying that elderly people who want dramaand threaten to kill themselves if they don't ge their own way are never serious about it.

How do I know this? Because when people are serious about taking their own life they don't reach old age.

Stop letting your mother manipulate you with empty threats about killing herself if you take a repite break. Tell her it's happening and if she wants to kill herself, to go right ahead.

Make the necessary arrangements with whatever facility she'll be going to so you can have your respite break. Then take it.

Let her threaten, rant, and rave all she likes. Take your break anyway. In fact, I think you should leave her permanently in whatever facility you place her in for the respite.

Enough is enough.

Your mother has hijacked your life and you are her care hostage.

TAKE YOUR LIFE BACK!!!

She won't kill herself or do anything else.
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Reply to BurntCaregiver
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Would it be possible to consider putting your mother in an in-care hospice situation for a month or so if not longer? Your mental and physical health have taken a big hit having to care for two ill people, one who has passed away. Did you have time to grieve your father? If you don't have time to grieve it can also manifest in your body through physical symptoms. It has been said on this forum A LOT but caregivers will often die before the person being cared for because of stress. I see in your post you have problems with your lumbar (spine) please tell me you are not attempting to lift your mother! That can cause some severe and bad damage to your back. I think part of the moodiness is resentment, but we have to learn to say "enough is enough" as caregivers tend to push their own mental and physical health on the backburner.

I have seen Alva post this, do not feel guilt. You did nothing to make your mother ill. Guilt should only be felt when there is truly something you did, and this is nothing anyone did. The body ages and starts to break down. Some people do not have as much wear and tear than others. You also write that your mother is on hospice, so she is at the end of her life. Are they looking into giving her anti-anxiety and mood stablizers? Is she on pain meds?
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Reply to DoggieMom86
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Put her in in patient hospice somewhere and then take a vacation and move back home with your husband.

Your sister didn’t abandon you. She likely had to go back to her family so she wouldn’t abandon them.

You sound like you are in handle it mode and because of that you aren’t making good decisions. I’m glad you posted here.

Your mother isn’t going to kill herself. She would have done it by now given all of her health issues. My BIL killed himself. He never threatened it once and we were gobsmacked. People who are going to do it, do it.

Get out of there and go back to your husband in your house where you belong.
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Reply to Southernwaver
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One of the great benefits that Hospice will provide is RESPITE care.
This is covered by Medicare, Medicaid and most insurance.
Talk to the Hospice Nurse and or Social Worker and they can arrange a Respite stay for her that will give you a break.
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Reply to Grandma1954
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Last year I moved half way across the country to take care of my MiL that was on hospice. Hubby and daughter stayed home, so I had no support system in place to help me while I was caregiving her. Long story short, MiL was told flat out she had a choice it was the state would come in an place her or she moved to my house.

Hind sight being what it is, I should have told hospice I'm leaving and they need to find a place for her. She had the money to hire in home caregivers, or whatever else she needed. She wanted me to slave for her, and that was exactly what it was. She made it a point of using her money going to her son, my hubby and to my kids. I never even got a thank you when she was ordering me about. I would have preferred that she used her money to pay for care givers and not been at her beck and call.

She was very manipulative and I find that even months after she died I still resent the fact I put my life on hold for her. Hubby was and is grateful that I took care of his mother, but I find I resent him as well. I think it will take me awhile before I get over it.

I realize this is YOUR mother, however, you should not be living with her. You should be with your husband (even though he is a trooper.) Time to put yourself, and your hubby first. Place your mother, and visit her. She lived her life, and you need to live yours. I can't help but wonder if somewhere deep down, where hubby wouldn't say anything, if he is also resenting you living with your mother and putting her first over him.
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Reply to Dislocated
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sometimes there is no way to get a person with dementia to understand such things. If you need a break, may need to just do it
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Put her in respite care and take care of yourself or you will be the One who Passes .
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Reply to KNance72
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Ignore the “I’ll kill myself!”. She’s just being manipulative. Why are you letting her ruin your life? You know her true colors and they’re ugly!
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Reply to LoopyLoo
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She will not kill herself. Get respite.
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Reply to Sadinroanokeva
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Myrtle, your health matters. Your body is crying out to you and telling you to STOP because of the stressful situation with your mother. This stress that your mother is putting you through will aggravate your lumbosacral disc disease, it will cause your hair to fall out, and it will cause your eczema to flare up. Please listen to your body. Do not let your mother manipulate and intimidate you. You need to take a respite break STAT before you end up having a mental and physical breakdown. Perhaps your sister abandoned you because she realized that your mother is a narcissist and she needed to run as far away from her as she could as this is the only way to survive a narcissist. Your mother is trying to send you on a guilt trip, and I’m urging you to not allow her to make you feel guilty. Please do not let her do this to you. Statistics show that the stress from caregiving causes the early demise of the caregiver before the person they are caring for. Do not be a statistic. Take this well deserved respite break and do not give a second thought of what your mother thinks. Medicare/Medicaid will pay for your mother to go into respite care while you take a break from caregiving of your mother.
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Reply to Dupedwife
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I’m glad that you have a supportive husband. Fair warning though, no matter how supportive that he has been, sharing you with your mother will get old.

I speak from experience. I was the primary caregiver for my mom for many years.

I was fortunate that my mother never threatened to kill herself. Nor, did she refuse outside help coming to our house.

I went to a therapist to discuss my situation. As I was telling him how I felt, I broke out in hives. My therapist said that anytime something starts to manifest itself physically that it was past time to take control of our lives.

Your stress is affecting you physically and emotionally. You don’t need your mom’s permission to change your life. Make a plan for her to be cared for and take care of your own needs.

Wishing you all the best.
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Reply to NeedHelpWithMom
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Myrtie Apr 20, 2024
Thank you for your thoughtful post. I can’t respond to everyone as my time is limited, but everyone gave good advice. We have spoken with the Hospice care team and nothing seems to work. So to solve everyone’s problems, she is moving in with me and my family. I will have more help and can spend time with my family in the mean time. She is not bed ridden, and still has control over her functions, so this will help a lot. I do understand the importance of self care and I intend to take everyone’s advice the best I can and take one day at a time. Thank you NeedHelpWithMom. Your advice is most considered.
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My mother thought I should leave my husband and kids to be with her 24/7. Called me selfish when I refused. She wrote a suicide note and attempted. I let it go long enough that she would require medical attention to reverse what she had started. Then phoned EMS. Refused to take her back when the hospital discharged her.

That’s how I got her into care. Over 2 years ago. She is still very much alive. And I am so happy to be away from her nastiness and manipulation.

Telling you that you don’t love her because you dared to ask for a completely reasonable accommodation should tell you that she only sees you as a way to get what she wants. Not a fellow person to be loved. That’s a harsh realization and I had to face it too.
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Myrtie, I pray for all of your sakes that the new living and caregiving plan works well for everyone.

God bless you all for being willing and trying to help your mom through this season of life, it's hard at best when the care recipient is amenable, beyond difficult when they are not, may she go more with the flow and may you get your much deserved, much needed respite.
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Reply to Isthisrealyreal
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She may 'never understand' - the question is "How do you do it?"

It sounds to me that you need to leave this situation.
While this may be extremely difficult for you, you must make decisions that address your needs, not hers. This is for your survival.

You need to learn how respect and love yourself - and that is a long life process for many of us.

As you are allowing your mother to 'run circles around you,' ("I will kill myself if I leave my home" ... drama) you need to examine WHY you are reacting as you are. This is likely a life long pattern / relationship.

Yes. You are totally burnt out. This is why you need to stop - and put yourself first. If you do not, you will continue to suffer and decline. It is a choice you make. Perhaps - clearly, not an easy choice as changing your behavior (putting yourself first) is / will be new to you and likely extremely uncomfortable. However, you need to look at the consequences of your behavior - and choices.

I encourage you to say:

1) I need to take care of my own health now which is compromised (do not explain or make excuses).

2) We are (or) "I've decided ... you are going to respite care as I need a break and you need the care they provide.

3) This is not open for discussion.

4) Never EVER argue.

5) DO NOT allow yourself to get 'hooked' in as she (likely) will try to convince you what is GOOD for her ... disregarding what you need (she may not be able to / doesn't have the capacity to care ... she is likely in a "me, me, me" mode - and this could also be partially due to dementia (I don't know).

6) The way you avoid being 'hooked' in is making / clarifying what is happening and when and then WALK AWAY / leave the room. Do not allow yourself to engage in any argument / exchange. You do not have the self-confident / self-esteem to do this - the way you maintain your stance / boundaries is by leaving the room.

7) She will be very angry. She'll need to do what she knows to do - argue, scream, have a tantrum (however she manifests her displeasure). How you are responding to her is VERY NEW and she won't like it at all. It likely may frighten her ... you might reassure her "you will be in good hands." Then walk away. Yes, this is TOUGH LOVE. And, you need tough love, too.

8) You need to make other arrangements for her care/givers and/or severely cut down your involvement.

"IF" you do not have legal authority to make these decisions, then your mother makes her own decisions, hires her own caregivers. In essence, you leave the situation and let her do as she wants. Yes. This is not an easy situation for either of you.

You need to consider the quality of (a) (your) life that you want - and move towards it, one step at a time. It may start with physical separation.

MOVE OUT... leave your parents' home.
Do you have a home to go (back) to?
Why are you (living) there - and for so long?

You need to extricate yourself from this toxic situation, even if you consciously believe you do not want to. Your mental / psychological / emotioinal, and physical health is telling you / screaming at you: "please take care of me" (meaning yourself).

No one can do that for you.

You have to make this decision.

I hope you do.

Gena / Touch Matters
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Reply to TouchMatters
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You have done more for your mother (and father) than most children do. You have no reason to feel guilty. You cannot help the fact that your mother is in the condition she is in. You really need to take care of yourself. She sounds like a Narcissist to me. My mother is sort of like that too. She wouldn't heed my advice and ended up having a bad accident which took away her independence forever. She is 96 years old now and her mind is starting to get really bad now. But before, she would get mad at me and try to bully me if I suggested something that would be helpful to us both. More than once she used the phrase " that wasn't very nice of you" like when I put her in a very lovely place for respite while I took a much needed vacation. I put her back in assisted living for a few weeks also while I took another vacation the following year. Both times she acted mad at me. But when I got back she was as nice as could be. You have to think of your own health and mental sanity. Yes, you are her daughter and yes, she took care of you when you were a baby and growing up but that doesn't make you her lifetime caregiver. Do what you can when you can. Get help. I pay a friend to visit my mom when I have a lot of things to do and can't get over to her nursing home for several days. My mom loves this young girl. She has no idea she is getting paid but it helps me out and makes my mom feel better. There is way more to this story, a good 3 years of things, but I won't go on and on. The point is you have to love yourself too. And you should not feel you are the only one who can help. I have no help either, I forgot to mention. Your mom is just bullying you because she knows she can. Stand up for yourself. She might act mad at first but I bet she knows what she is doing and will actually realize that you need breaks and time for yourself. Good luck!
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Reply to pb2manydogs
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Leave. Please, moving mom into your home will be a colossal mistake. Go back home to your husband, alone.
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Reply to JeanLouise
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Honly, you have to take care of you too. I also am primary caregiver for both parents. I kept my mom home as long as I could. She has Alzheimers. Dad's health is bad and also suffers from mild dementia. I had no choice when she started wandering off. She is in memory care now. Dad has gotten worse since she has been gone. I am 24/7 with autoimmune disease, also degenerative spine, etc. I am so burnt out. I told him he goes to a nursing home or we get in home help bcuz my body and mind are suffering greatly. Begrudgingly, he preferred to stay home and his aide starts tomorrow. Meals on Wheels also starts tomorrow.
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Reply to LaurieEV
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She will never understand or agree. However you are the boss now, as she is unable. Take her to respite or better yet, place her in a facility full time that can care for her.

You have taken on too much and must consider your own health now.
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Reply to Donttestme
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Hospice wanted me to put spouse in respite. Almost did it. My friend came down and said NO.
She asked for my C:C number and got my angel . He took over. I was able to let my guard down. He made sure he was comfortable etc.
he didn’t miss a medication.
I was able to be by his side when he died. I would’ve felt guilt beyond guilt if I removed him for those few days..
if you feel you need a break, get a care agency and determine what can you afford for a week or however long. If you need more time, then place her permanently in assisted living.
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Reply to MAYDAY
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You can't make her understand. And she doesn't have to.
You do what is right for you.
You can not continue caring for someone else without a break to take care of yourself. You may not be able to continue at all. Only you can determine what you are capable of.
She is manipulating you with guilt, to try and make you do what she wants.
That is unfair to you, and something no reasonable parent would want to do to their child. She is not acting with reason, and you can't reason with her.
You have to make this decision on your own, and just do it. You can not control how she will respond to it.
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Reply to CaringWifeAZ
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Self care is important and you have to do what you have to do regardless of what your mother says. You will be a better caregiver if you take time for yourself sometimes. There's a lot of Truth in the old saying that says you can't care for someone else until you care for yourself.
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